Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: I recently graduated with my masters in social work and, during my studies, I learned that November is National Epilepsy Awareness Month. What research, resources and information are available to help me support clients with epilepsy and other seizure disorders and their families? This edition of Answered Questions includes items that address photosensitive epilepsy and existing and emerging information and communication technology (ICT); discuss a study on the impact of caregiving for severe childhood epilepsy; look at the risk of COVID-19 infection and severe complications among people with epilepsy; discuss the integration of information and communication technologies into neuropsychological interventions; and identify areas for improvement in the management of epilepsy in developing countries; among others. More about Answered Questions.
NIDILRR-Funded Projects:
The Rehabilitation Engineering Research Center on Universal Access to ICT (TRACE RERC) (in English) directly impacts the lives of people with disabilities, including epilepsy and other seizure disorders, by addressing key accessibility gaps that inhibit or prevent their use of existing and emerging information and communication technology (ICT). The objectives of this center include replacing the proprietary and failing photosensitive epilepsy analysis hazard screening tool with an open-source version that can handle new video technologies and creating and improving accessibility standards around public access, safety, and general ICT accessibility.
From the NARIC Collection:
The article, Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups (in English), discusses a study that identified domains that should be included in a measure of caregiving impact for caregivers of children and young adults with severe epilepsy. The study found ten specific subdomains that could be classified into four overarching categories of physical health, mental health, social function, and financial resources. The findings of this study highlight the significant life effects of caring for a child with severe epilepsy.
The article, Risk of COVID-19 infection and of severe complications among people with epilepsy: A nationwide cohort study (in English), shares a study that evaluated whether people with epilepsy were more susceptible to COVID-19 infection and at greater risk of severe complications when infected with COVID-19 in comparison in people without epilepsy in Korea. The study found that the presence of epilepsy was not associated with increased susceptibility to COVID-19 or mortality related to the infection. However, there was an increased risk of severe complications with COVID-19 and careful management and monitoring may be necessary.
Management:
The article, Identifying areas for improvement in epilepsy management in developing countries: An experience of neuro-cooperation in Cameroon, discusses a study to identify areas for improvement in managing epilepsy in developing countries. The results of this study indicate that there is a need among healthcare professionals for education and information about epilepsy, its diagnosis, and management options, to optimize management and improve patients’ quality of life.
Education and Employment:
The article, Academic and employment insertion as a factor related to quality of life in patients with drug-resistant temporal lobe epilepsy, discusses a study that analyzed the effects of academic and employment inclusion on the quality of life, anxiety, depression, social support, and executive functions, and the relationship among these variables in people with drug-resistant epilepsy. The study found that patients who were included in school and work had a significantly better quality of life, lower trait anxiety, and higher social support. The results of this study could help the implementation of programs that promote a return to school or work, considering the relevance of socioemotional domains.
Resources:
- The NIDILRR-funded Model Systems Knowledge Translation Center offers a factsheet, Seizures after a traumatic brain injury, with research-based information about seizures that may occur after a traumatic brain injury (TBI). The factsheet discusses symptoms and risk factors, medications to treat seizures, safety issues, and what caregivers should do for someone who is having a seizure, among other topics. This factsheet is also available in English.
- The National Institute of Neurological Disorders and Stroke (NINDS) (in English) provides evidence-based and easy-to-read information on epilepsy and seizures. The information includes a definition of epilepsy, the types of seizures and epileptic crisis, how they are diagnosed, and how epilepsy is diagnosed and treated, among other topics.
Courses:
- Exploring epilepsy: Information, knowledge, empowerment, a free course from Living with Epilepsy for people living with epilepsy and their loved ones, is made up of three modules: Basic information about epilepsy, pharmacological treatments; and support for people with epilepsy. Each module is made up of videos, factsheets, and glossaries.
Further Research:
REHABDATA:
PubMed:
International:
Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.
